Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Finally I know the results of all the tests and investigations concerning the two spinal lesions. One is definitely not cancer, and one definitely is. I may know the results, but I'm still a long way off really understanding them, and what the exact implications are for the future. Up until now, I've been fully up to speed with each and every twist and turn of the route my cancer has taken. I've been on the ball enough to ask all the right questions, so I'm feeling more than a little lost and confused and somewhat out of control at the moment. Basically, like most people, I used to think that cancer was black and white. Either you get treated, you make a fabulous recovery, and live happily ever after as a "cancer survivor", or you get a treated, it doesn't work, and you die. During those long ago days when cancer was something that only ever happened to "other people" I had no idea that there was a myriad of different layers and shades and textures of grey, where things just aren't black and white and easily understood. I had a long and detailed conversation with a very articulate and personable Oncology Consultant, we spoke the same language and I understood every word individually, but I came away puzzled as to what the cancer will do next, and even more puzzling is that WM, who was sitting next to me and taking an equal part in the same conversation, heard a different message to the one I've partially taken on board. So this is what, between us, we think we know. The cancer has spread to my spine. However, they believe that it might have been there when I had chemo, and that the chemo might have stopped it in its tracks. No guarantees though. There are no other visible traces of cancer in my body whatsoever. So I wanted to dance around the room singing happy songs with a great big smile on my face, but the Consultant then added a few bits that, in the light of what we had just been told, simply didn't add up. I am now classed as having Stage IV cancer, the terminal stage, also known as Metastasis, or Metastatic Disease. They are now starting me on Zometa, a bone-strengthening intravenous infusion I'll have to have every three weeks. This is used for patients whose cancer has spread to the bones, so, despite the fact that we were told it was sorted, they obvious are concerned. When I stupidly asked if, in the light of the good news I'd just been given, could I expect to live for another 30 or so years, the Consultant shook her head quite vehemently. If I was very lucky, at most I might make it for 10 years, but, her words, "it is almost inevitable" that the cancer will return. The average life expectancy is a rather sobering 26 months from today. So does this mean that the cancer I've already had is still lurking in me, hiding away, waiting for the right moment to strike? Or does it mean that, because I've shown a previous susceptibility to cancer, it will happen all over again from scratch? To be honest, right now, I don't know what I'm feeling, Vulnerable, wobbly and a bit off-balance would be at least some of the adjectives that might describe aspects of it. There are still too many unanswered questions, and huge gaps in my knowledge. I also feel a bit of a fraud. How can I have metastatic cancer when it's only such a teeny weeny little single splodge of it that seems to be done and dusted already? Am I dying? The irony of all of this is that, after 4 months of feeling like death warmed up with no energy or oomph, and breathless all the time, this week I'm suddenly recovering my strength and vitality. It's gradual and slow, but I already feel better now than at any point since a few months before I was diagnosed. Anyhow, for now I'm definitely not dying. Over the coming weeks I'll get the answers I need, but first I'll need to work out which questions to ask. Once I'm clearer about exactly what's going on, I'll be back in the driving seat and much better able to deal with all of this. Meanwhile, life is far too precious to waste any moment of it worrying and obsessing about things I can't do anything about. My job for the moment is to just keep going. Even if I do get seriously ill again at some point, my job will still be to keep going for as many extra days as I can. They are making breakthroughs and discoveries about cancer and it's progression all the time, and as long as I'm still remembering to breathe in and out on the day they make the discovery that will send my particular brand of cancer packing, then I'm home and dry, and I may even make my nineties, never mind my eighties.

It's actually a lot more than just keeping going. It's about living a full and happy life. Even if I only get another few years, there's absolutely no reason that they can't be fabulous ones.

Well, today has arrived. I'm surprisingly calm and resigned to a day which will define my life from now on. It's Pet Scan results day. Before lunch I'll know if my Stage 3 cancer has progressed to incurable Stage 4, and if so, how much the cancer has spread and to where. Or I'll be told that my body is completely cancer-free, and I'll have won the biggest battle of my life. Either way, the news is going to be pretty life-changing. If there is no sign of cancer, I can start to make plans for the future and begin to put the past year behind me. I'll also have to do everything I can possibly think of to make damn well sure that cancer doesn't think it can just dance right back in and take over again. I have to boost my defence mechanisms by eating better, sleeping more, and getting less stressed. Dead easy on paper, but putting them into practice is another story. If these lesions on my spine turn out to be malignant, or even worse, they also find other cancer cells elsewhere as well, then the future may be pretty bleak. Basically, if that has happened, it will mean that despite surgery, chemo, radiotherapy and drugs-galore, the breast cancer cells have taken a hold, and will almost certainly eventually kill me. The medical treatment will change emphasis - it will all be about slowing the progress of the advancing cancer, and keeping me alive for as long as possible. Sometimes this works well and people live another few years. Sometimes it doesn't work quite so well. Either way, the rest of my days will be dominated by cancer treatment. I will also have to really try and make some pretty big lifestyle changes to give myself the very best of chances. I'm so lucky to be getting this news now, when there are so many advances being made in cancer-treatment. If it is bad news, my job will be to take each day as it comes, and still be alive on the day they make the breakthrough in research that will stop my particularly cancer in it's tracks. However, nothing really awful is going to happen this morning. It's just a meeting, with words, and after being on tenterhooks for the 6 weeks since they first discovered these spinal lesions, whatever the news will be something of a relief, at least we'll know what we're facing, and can adjust accordingly. It's not actually going to change anything, other than what we know.

This afternoon, though, is much more scary. I'm having that tooth pulled out. The one that's caused constant toothache for over a month. Needle-phobia is having a party at my expense - needles in my mouth is just so beyond terrifying. Then the noise as they pull it out - this tooth is far back so I'll really hear everything at a magnified volume. I thoroughly intend being a pathetic wuss afterwards for the rest of the evening. Actually, it was a bit of a stroke a genius to get the dental appointment for today. It really has been effective at completely putting the whole Pet Scan result moment in the shade - all week I've been dreading the dentist so much that there's been no spare capacity to worry about anything else. Superb distraction therapy. Plus, if it turns out to be a horrid bad news day, well lets get all the horrid stuff over with on the same day, no point in spoiling two perfectly lovely days when we can get away with spoiling one. If the news is great? Well, I'll be so happy that even a tooth extraction won't have the power to rain on my parade! Heads or tails? Tonight I'll know which way the dice fell. Whatever way up, knowing is always better than not knowing.

Thank you for all your positive thoughts on Thursday - they worked a treat because I got through it relatively unscathed, although I was so exhausted by all the nervous anticipation beforehand that I slept the afternoon away. Sometimes there is somebody who works at the hospital who must have been an angel in a previous life,and I had one of these lovely guys easing me through the whole Pet Scan process. Not only was he compassionate, caring, and knowledgeable, he was also one of the very few people who can find my tiny, deeply buried and almost invisible veins at the first attempt, and knowing how needle-phobic I am, he used the smallest paediatric needle there is. Altogether, he made the whole thing a thousand times more bearable than I had ever imagined possible. Do you know what the very worst part was? No, it wasn't the needle going in. It was the shock of being told staying perfectly still for a whole hour meant that I wasn't even allowed to talk. Me? A whole hour of silence? Total torture. You should have seen the look of WM's face. He was trying so hard not to laugh, but he also looked like all his birthdays, Easters and Christmases had arrived at once. He never gets much peace and quiet with me around.He was actually marvellous during that hour. There are definite advantages to having a Clinical Hypnotherapist as the love of your life. He spent the whole time making me totally relaxed (again something I'm really not very good at) and got me floating away in a lovely healing trance.So it's done and dusted, and I get the results this Friday, so I've got the rest of the week to enjoy - in blissful ignorance as to whether or not I've got incurable cancer.I'm dreading Friday, but not because it's results day. I've just made an appointment that is much more scary than that. I've got to have a tooth pulled out. So it's cancer news at 11.15 and tooth extraction at 2.45. I've had toothache for nearly a month now, there all the time but nowhere near as excrutiatingly painful as the couple of times I've had major infections. With all the comings and goings lately, I tuned it out and put off making a dental appointment. Last week, the worsening pain made a dental visit essential, and it turns out I've got a really nasty infection, and the reason I haven't been screaming in pain is because it's on a tooth that had root canal treatment donkeys years ago, so there is no nerve. The dentist gave me antibiotics, but warned me that I'd be lucky if they worked well enough to save the tooth. Root canal treatment a second time is a huge deal, only done by specialists, and prohibitively expensive because it's not available on the NHS. The 5 day course of antibiotics has finished and I've still got toothache. It took me nearly an hour to pluck up the courage to ring the dentist. Then they offered to do it this afternoon. Crikey wikeys. No way Jose. Sudden light bulb moment and I knew it had to be done on Friday. That way I will worry about the dentist rather than results all week. And if Friday turns out to be a bad day, having a tooth out won't make it any worse, and if it turns out to be a good day, well then I'll be walking on so much happy juice that even having a tooth pulled out won't rain on my parade.Cancer isn't very pretty, and it's pretty devastating when you find out you've got it. The treatment for it is vile, and there is new research that shows that nearly 30% of people who survive cancer suffer from Post Traumatic Stress Syndrome, with flashbacks to the horrific treatment ordeals. But there are definite upsides to having cancer too. For many of us, new opportunities open up that would never have been possible without a cancer diagnosis.Without cancer, I would never have written this blog, which is now read by people all over the world, many of whom have become really supportive online friends. Without this blog, I wouldn't ever had had the chance virtually dropped into my lap to turn it into a stage play, with me also being able to play the title role. Now how exciting is that? We have less than 4 weeks before we open at the Brighton Fringe on the 18th May. So much line-learning to perfect in such a short time. So few rehearsals to get the timing, the entrances and the props working in the right way. Most of the script has been lifted directly from the blog, but there are one or two new bits. We're calling it "Coke Floats and Chemo", but it could just as easily be called "Breast Cancer - the comedy". Most of it is hilarious, certainly during rehearsals, but peppered with the odd moment of seriousness every now and again because cancer actually isn't that funny. My problem is trying to keep a credible straight face during the darker moments because I'm so busy laughing my head off. The blog and the play is only one part of the upside, there are so many others. In June I've been invited to talk at the NIVAS conference, addressing leading medical professionals from around the world about what it is really like to have needle-phobia. It is a very humbling opportunity to maybe just make a tiny difference to the way needle-phobic patients are perceived by those striving to treat them. Most humbling of all though, is the way my friends and family have wrapped me in loving, warm support from the moment this cancer malarkey started. Without cancer, I would never have known just how blessed I am with the people I love.Other people have had similar experiences to mine. One very dear, new friend I have acquired online is Chris, who keeps a blog called "Chris's Cancer Community", here's the link if you'd like to read it.

Cancer has totally disrupted Chris's life too, but doors have opened for him too that wouldn't otherwise have been there without his diagnosis. He writes about it more beautifully than I ever could. Chris is very highly regarded within the online cancer community, because he is continually supportive and enso couraging to those of us who are a bit newer to the whole cancer caboodle than he is.

Then there is Ann, who has become a very dear friend over the past few months.Since her diagnosis, Ann has channelled her energies into a very exciting project giving children educational outdoor experiences at her Forest School, building their confidence and inspiring them to care more deeply about our planet. Last week Ann was invited to a very top-level meeting which included an MP to discuss environmental issues, but it clashed with one of her chemo appointments. Guess what? The other meeting attendees have decided that her input on this is essential, so they are going to re-schedule the meeting around her hospital appointments! It made her day last week to realise that her views are so highly valued, again something she may never have realised without her cancer kick-starting her chain of events. If you would like to read more about Ann and the Forest School, here's the link to her JustGiving page, which has a very good overview of her project:

Back to Coke Floats and Chemo. If you really do want to come along and watch me make an idiot of myself, tickets are selling out quite fast already. We are doing two afternoon performances at the Brighton Fringe on Saturday 18th May, followed by one at the Charles Cryer Theatre in Carshalton on Thursday 4th July. Both venues are very small, and at the Charles Cryer we are appearing alongside other Savvy drama productions so tickets will sell out very quickly. The box office phone number for The Charles Cryer Theatre is 020 8770 6990. Here's the link to get tickets for Brighton

Here's a photo of last week's rehearsal featuring the MiniYvonne puppet and WM, with the legendary Paperwork Mountain in the background.

Don't even ask what they're doing but it's almost certainly not what you think! My current big ambition? To knock that real paperwork mountain into shape before Friday, Then, I'll have something to celebrate no matter what. .

Today is so scary, I've been in a state about it now for nearly a week. They decided against doing a bone scan to see what these two lesions on my spine are, and instead they are giving me a Pet Scan, not to see if I've swallowed any dogs or cats, but to find out absolutely definitely if the cancer has spread there or anywhere else. They don't give Pet Scans to everyone, they are really expensive, so they reserve them for those of us who have a real risk of cancer spreading out of control. It's very clever, the scan picks up sugars in the body, and where there is cancer, sugars behave differently. With a bone or a body scan, any cancer has to be half a centimetre to be seen; Pet Scans detect cancer at cell level. In some ways, it's a very odd, but strangely exciting place to be. Next Friday, I'll get the results, and whatever they are will life-changing. The good news will be that there is no cancer whatsoever, which will mean that for the first time in nearly a year I can relax and know that all these really gruelling months of treatment will have been worth every moment, and I'll be able to start to put it all behind me and live a long and deliriously happy life. The bad news will be that the cancer is incurable, which will mean that cancer treatment will be an ongoing part of my life forever, and that that I will probably die much sooner than most people. It's like standing on top of a mountain, and waiting to see which way I get pushed, and the whole decision is completely out of my hands. That's not the scary part of today. The scary part of today is that, in just over an hour, I have to face my needle fear all over again, but plus plus plus. I am the most needle-phobic patient ever, and if you're new to this blog, there is a previous post you can read where I explained all about my riduculously embarrassing stupid phobia:

They can't use my portacath because the stuff they need to inject is sticky, and would stick to the plastic tube leading into me rather than making it all the way into my veins. They can't even use my arms, because the armpit surgery I've had on both sides means that there may be scar tissue which might prevent the stuff circulating properly. Oh no, my worst fear of all, they are going to inject into veins in my feet. I've seen some poor people in the chemo room have this done, and it's always scared the living daylights out of me. I've been bursting into tears all over the place all week about this, and lying awake at night frightened witless. I've tried to get it into perspective and not be such a pathetic wimp over the whole thing, but I have failed dismally. I'll get there at 9.30am, they will do the needle sticking into me part, and no doubt this will go on forever because they can never find a decent vein until they've poked and stabbed a squillion times. Then I have to lie completely still for an hour to let the stuff circulate and bind with all the sugars in my body, then the scan itself will take up to 90 minutes. So I'll have to lie still and not move a muscle for nearly three hours. Me? Are they serious? If the needle doesn't kill me I might die of boredom. Oh, and I'm not allowed to eat until afterwards - which should be something to take my mind off it and look forward to a yummy lunch, but right now I'm not convinced I'll even live that long. I wanted to write about all sorts of things, but time is short and I really have to go. If I get a chance later, and I actually do survive this ordeal and I'm still alive, I'll try and write some more, probably about happy things like birthday parties and stage plays, and maybe even a bit about the language people use to describe having cancer. Wish me luck!

Have I now got incurable cancer or haven't I? Well the jury is still out, the MRI scan was inconclusive, and I'm waiting for a call from the hospital to hear whether or not I now need a bone scan to get a clearer idea of what on earth is going on. What we do now know is that it's not just one little lesion on my spine, it's now two, so we'll just have to wait and see. Luckily, there is so much else going on at the moment that this whole thing is way down low on the "things we have to think about" list. "Coke Floats and Chemo" is well into rehearsal and I'm having a great time with it. It's the stage play of this blog, and it's only 5 weeks til we perform it at the Brighton Fringe. I'm playing myself, and the cast also includes WM, my lovely daughter and Anita, my friend who took the photos for the Cancer Photo Shoot blog post of several months ago. Sheree Vickers who runs our theatre group, Savvy, is the brains behind the whole venture, and it's her energy and vision that's making it happen. It's very hard to try and condense the whole of the last year into a 50 minute play, but somehow it's working out well. It's hopefully uplifting and funny rather than sad and depressing, and the real star of the show is a puppet that Sheree has commissioned, which is the spitting image of me. We had it at home for a week because my daughter is one of the puppet masters, and it is so lifelike that we had great fun freaking everyone out with it. Basically I share my role with the puppet, and "Mini-Yvonne" can get away with doing a lot of naughty things I'd love to do but never could. It's also a back-up - because if, on the day, I'm not well enough to go on stage, Mini-Yvonne will just have to carry the whole show. She's far more talented and considerably funnier than I am, so maybe that wouldn't be a bad idea. Later today, I'm helping put together part of the backdrop for the play. Sheree has had a "paperwork mountain" built to mirror my own one, and our job today is to stick lots of bits of paper onto it to make it look more realistic. Sheree knows me very well, and has baked dozens of cakes to lure us over to help!Here are a couple of photos of Mini-Yvonne - one relaxing in Alice's house with a glass of wine, and the other, looking rather fetching and sexy in some swimwear. Notice the selection of wigs, and what you can't see is that she even has removable boobs, just like my own little falsie! .

We are doing two performances at the Brighton Fringe on Saturday, 18th May, and here's the link:

Basically, working on this is a lot more fun than worrying about whether I've developed incurable cancer or not. Obviously, this whole new health thing is there, constantly at the back of my mind, and I have done a fair bit of thinking about it. It's a bit of a luxury being able to think about it while it's still a hypothetical issue. I don't know exactly how I'll feel or react if it does turn out to be sad and difficult news, but I do know that this shadow of cancer that's been hovering over me for nearly a year has already taken up more than enough precious time, strength, energy and resources. I really hope that any more bad news won't launch me into some deep dark miserable depression. Life is just too valuable to waste on being down in the dumps about things that we can't change, particularly if that life is unlikely to be as long as I'd always hoped and expected it to be. It's far more important to spend time with the people I really appreciate, family and friends, laughing a lot over a glass or two of vino.

One thing that has become crystal clear to me is that I'm sick and tired of waking up each morning carrying the guilt of all the mounting admin tasks that need doing. Somehow, I really want to make a superhuman effort to clear it completely. It's the additional mindless crossing the i's and dotting the t's that comes with having disabled children. Each of the children has a multi-disciplinary team of professionals supporting them, and in our modern-day tick-box culture, each of these professionals generate a mountain of documents and forms that need filling out. Last week I collected all the paperwork together and spent a whole day going through it, and made a list of the tasks that need doing. Of the 106 tasks on the list, I've managed to knock off 43 in less than a week. Unfortunately, another 8 things have been sent in the last few days so the original list has grown, but I'm down to about 71 things to do, I think. It still feels like a mountain to climb, but it's a lot more doable than over a hundred.If they are ever going to find a cure for cancer for me and millions of others, they need money to do the research. A few weeks ago, Claire and Dave, a lovely young couple who have really supported my son Toby and myself over the past year, did something quite incredible. They signed up for the Marsden March, which is a fourteen mile sponsored walk from one end of London to the other, starting at the Royal Marsden in Fulham, and ending at the Royal Marsden in Sutton, where I'm having my cancer treatment. The Royal Marsden is a specialist cancer hospital, working very closely with the Institute for Cancer Research, also based on their Sutton site. The work they do pushes boundaries not just for their own patients, but for everyone with cancer all over the world. What made Claire and Dave's gesture all the more amazing is that they took Toby with them, and pushed him in his wheelchair the entire way. The weather was foul, it poured with torrential rain all day along the whole route. Toby really didn't understand any of it, which must have made it much harder for Claire and Dave, who were reassuring him and keeping him happy the whole way. They got up really early, parked the car at the hospital in Sutton, then got on a coach to Fulham. Toby was very excited for this bit. He loves coaches, but he must have thought it was a bit odd that there was no castle or seaside when he got to the other end. Instead, they walked all the way back to Dave's car in the pouring rain, so he must have wondered what on earth was going on. He has very little speech or understanding, but he did have Claire and Dave's kindness and love all the way. We were there at the finishing line, when the three of them, along with 5,000 other soaked-to-the-skin fellow marchers, arrived safely. Claire and Dave helped Toby out of his wheelchair for the last few yards, and supported him as his walked towards us. It was one of the most emotional moments I've had this year when I saw him cross that line.

Here are the three of them, finally under cover, a few moments after they completed the walk. Already they have raised well over £700 for cancer research, but if you would like to support them too their JustGiving website link is http://www.justgiving.com/Claire-Devine1. There's a lovely photo on it of them taking Toby ice-skating just before Christmas too.

I'd better go and get ready to give Sheree a hand with her paperwork mountain. It's going to be a lot more fun than doing my own. I'll try not to leave it so long between blog posts next time.

If you’d like to buy a copy of Yvonne Newbold's book, “The Special Parent’s Handbook”, here’s the link to the Amazon Page:

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.